Menopause And Hormones??

[Maxine]

A couple weeks ago I called Dr. Grubb's office about what's been going on with me lately. The poor nurse probably thought I was nuts. I just sat there talking is circles. She called me back the next morning, and I was still kind of out of it. She did ask if I just woke up.

I'm going thorugh menopause, and I know so little about this. I have researched so many other things regarding POTS, EDS, spine instability----and related things, but never read much about the effects of manopause on POTS. Dr. Grubb told me to be prepared, as menopause can make POTS worse. I just didn't take it all that seriously, and now here I am having some pretty intense symptoms-------------(that's what I get for not paying attention). The spine instability, pain, and disabling symptoms from that have overwhelmed me, as finding someone to help me with that has been a daunting task. Of course this has put some of the other health issues on the back burner. As long as my heart is behaving, I usually focus my limited energy on finding good neurologists, and neurosurgeons to work with me on my spine instability, brain lesions, and possible vascular congestion from the vertebral artery issues in my cervical/cranial junction along with an unexplained fluid buildup in mastoid area.

For months I have been going through some changes. I noticed hot flashes over a year ago. They didn't bother me other then making me temporarily hot. No other symptom changes in my POTS, other then the usual OI stuff. I have skipped having periods for several months, then they start back up. This time when they started back up they were heavier then usual. For me the flow was always medium to light, and only for 2-3 days----always since age 12. Now the flow is still about 3 days, maybe 4, but the flow was heavier-------(but still not like some woman I hear from who have very heavy flow for 7 days!) I felt so horrible with the peroid I had in Dec., and one day I went to wash my hair in the morning, and my hear started to beat wildly----like it was coming disconnected from the vessels. I got down and got into a ball on the floor, and it seemd to slow it down some, but I was left still pretty tachy, and very skakey. This passed, but from this point on, I always wash my hair in the morning before my husband goes to work, because when I had this spell, I felt like passing out. I always take a bath at night, but wash my hair, and wash up again in the morning. I don't take full showers by myself anymore because I tend to blood pool the worst in the shower.

I'm not sure I can handle going back to the old days of doing nothing by myself because I'm so limited. Later next week, I see my gynochologist, and hopefully she can test some hormones to see where I'm at with that. l had my thyroid tested BY PCP just in case that is overactive since I have hashemotos thyroid disease. ALL levels were in the normal range which means thyroid meds are working, but antibodies were HIGH.

referance ranges

T4---8.6 4.5---12.5

T3 uptake 29.6 24.0---35.0

TSH 2.110 0.40----4.40

referance range

ANTI-MICROSOMAL AB---- 1201 <35

THYROID-THYROGLOBULIN--- 2924 <40

Now this month, my period came, and I didn't really notice anything DURING, and it seemed to be back to the usual flow I had most of my life. However, BEFORE my period, the whole week seemed unstable. I was having those morning spells again, but sometimes would have them later in the day. I just feel more adrenaline lately. I was taking a little extra klonopin (still within the prescribed dose---because I never took full dose before), and this did help some. I think it just helped me handle it better. I think it also helped the adrenaline surges as well.

On Dec. 19th we went to a Christmas party, and a 6ft. 5in. drunk man got a little overly excited, and grabbed my by my neck and pulled me over to him, kissed me on the cheek saying, "God Bless You"! My first thought are, what is this going to do to me? Sunday morning rolled around, and I thought I might be OK, as I had my usual aches and pains. Then on Dec. 22nd. we had the little kids in the family over to make Christmas cookies. Thankfully, I only had to make the dough---as my dad's fiance, and the other two moms did all the cookie cutting and work. ONE PROBLEM THOUGH! I went to give the little 5 year old grandaughter of my dad's fiance a hug, and when she hugged me she picked her feet up off the floor! I quickly got down to the floor, but I felt the pain, and still continue to feel it. Keep in mind my neck is incredibly unstable already.

Now I'm sitting here wondering which is causing what? Dr. Grubb told me that the upper spine problems and EDS are likely the cause of my dysautonomia/POTS............................. Could this little accident have made things worse? I don't know..... I did have that spell in early Dec. before the further neck injuries. This is when I had the heavy period. So is it hormones, or is it worsening spine issues?

Tuesday I go to the orthopedic surgeon for a special kind of CT with my head turned to the left, and to the right in the hopes of getting a better picture of the instability. We have to drive 3 hours, and we have to leave early to get there for the CT beofre the appt.

I'm not sure what to think? I guess we can see how my hormone testing goes.

Any other tricks of the trade on how to handle these spells? I pray I never get SVT issues. I couldn't handle that---especially on top of the other issues.

The tachycardia I experienced seemed to have an adrenaline rush with it, and the heart pounding is short, but still tachy for a while after, but not severe. Very, very shakey though----and pulse in neck seems weak sometimes when this happens---------SCARY. This tells me it must be intense OI----blood pooling. I notice that during these spells my veins constrict, and I don't see the usual bulging veins in my hands. This morning I had a mild spell, and I feel light headed still. My neck is really bulging though----that swelling on the right side of my neck down near clavicle is worse. EDS doc suggested possible vascular congestion due to the missing left vertebral artery.

Dr. Grubb's nurse took all the information, but I probably confused her, as I was rambling trying to think of the various causes. She said she would talk with Dr. Grubb-----I haven't heard anything back. I won't call again, as I know Dr. Grubb has a lot going on-----I just can't bother him, so I'll work with other docs right now. Other docs can send notes to Dr. Grubb to keep him in the loop. I know he requested the EDS note fr, My EDS doc.

Maxine :0)

[firewatcher]

Whew! I'm sorry. Just a couple questions:

Are you sure that your neck bulge is NOT a goiter?

That is high for TgAb count. Are you on thyroid meds?

What are your LH and FsH levels?

((((((((((((((More cranial stabilizing hugs))))))))))))))))))

[potsgirl]

Maxine,

I just want to add my wishes that you'll be feeling better soon, and they get some more answers for you. I'm in perimenopause, and have been having hot flashes for awhile now, along with some pretty cruddy nights of sleep. Still haven't missed a period, though. I think I'd rather just get it over with!

Take care, and we're thinking of you!

Jana

[tinkerbella]

Maxine,

I want you to know that I'm thinking about you and hope you feel better soon.

xxx's

Bellamia~

[Maxine]

Thank you so much.

Firewatcher,

A couple of doctors said this bulge is more like an edema swelling, and it's it's on the side of my neck near my cartoid area down by clavicle. It could be possible vascular congestion, but so far no doctor has wanted to investigate this further. I must have decent blood flow, as the ultra sound of my neck was normal, even showing flow in the left vertebral artery which is really weird since there's no left vertebral on my brain MRAs-----2 of them! NIH verefied this!

No one wants to investigate what could be going on with the vertebral artery on the left????????-------(what happened to it in the cervical/cranial area?)

I asked my PCP to order the ultra sound. Keep in mind the ultra sound was done while lying down.

Blood work for LH & FsH wasn't done---- http://www.nlm.nih.gov/medlineplus/ency/article/003708.htm

http://www.med.umich.edu/1libr/aha/aha_fshblood_crs.htm

I'll ask my gynochologist if she'll order this blood work for me.

I take .75 of thyroid medication daily. I was started out on .25 in 1995, and I was on this a long time before it was increased to .50. I was changed to .75 in 2003 I think--------something like that. I do have an endocrinologist, but I've been having my PCP order my thyroid levels. My endocrnioloigist is the one that put me on a large monthly dose of vitamin D. I was afraid to take such a high dose fearing the same reaction I got on the smaller doses I took. It seems to cause adrenaline surges, dizziness, and aggravate POTs symptoms. Who would believe that? If I went to an appt. and told him this he wouldn't believe it, and think I'm being non compliant. I can't figure it out. Dr. Grubb said just try getting more sun-----he didn't know what to say. I'm sure he wanted to help, but who would know why my body doesn't like vitamin D. Seriously, I tried to take it over and over again, and I got flu type symptoms, and my pots would gets worse. When I tried that liquid form of it in costco one day---I had a very bad reaction, my heart was pounding so fast, and I was so dizzy. However, it was over quickly------then I wanted to go back to Costco.

How about narrow pulse pressures-----how many of you deal with this? One day my bp was 78/68----standing. I took it an hour ago, and it was 102/80. My system feels so wacked out!

Maybe I should be one of those people to go to Mayo. I've been going to the Cleveland Clinic, but this was all for the spine issues and brain lesions.

Maxine :0)

[Jan]

I can only address menopause.

I went off the pill last February and have only had one period since. That one was pretty long and hard but I didn't get as bad of a headache or as many POTS symptoms as I used to get around my period. In the meantime, it is wonderful not having the menstrual cycles and the ups and downs that go with it.

I get a hot flash about once an hour but I will take that over the cycles any day. My blood work indicates I am menopausal. My OBGYN didn't think I would get any more periods but I did get that one.

I highly recommend menopause. Love not having the illness that comes with my period.

[Maxine]

Thanks Jan!

Getting there is a real drag though. I took my synthroid a little late today at 4:30, and my Bp shot up to 136/96----heart rate 92. I felt my vessels begin to constrict---and felt creppy crawly----so I took my BP and HR-----sure enough it was high. I never had issues with synthroid in all the years I have taken it. My period is over now, so I don't get it. I did take my beta blocker late too.....soooo that

I hope menopause ends this up and down sttuff. I can deal with my OI issues, as those have fixes------------this doesn't really......klonopin...

The funny thing is that I didn't get symptomatic before or during periods-----this was before the last few months. Hormones were never really an issue for me before. Who knows though, because a lot of docs don't always do their job, so maybe I haven't been tested to the extent I need to be.

Maxine :0)

[dizzygirl]

my goodness maxine.. I just wanted to say i hope you get some relief soon! thinking of you :0)

love and hugs

dizz